Tuesday, April 13, 2010

When life and school crash together in a painful sort of way

We got some bad news at Stanford last week about Queen Teen's prognosis. Her hearing has deteriorated to the point where even her hearing aids aren't much help, and the audiograms over the past two years show a steady decline overall. After her audiology appointment we saw the orthopedist to take a look at her knees and he ruled against bracing. I wish I could say it was because her knees are fine and she doesn't need braces, but the reality is that bracing won't help so why put her through the trauma? Her ataxia has worsened, and odds are she won't be walking in two years anyway, so there's no point in forcing her to wear braces. She left the appointment happy that the doctor agreed she didn't need to wear braces ("I told you!"). She didn't hear the whole conversation. I swallowed my tears, put on a smile, drove us the three hours home, then went out on the back deck with a big bottle of wine and drank more than half in one sitting. Sometimes you just have to get drunk.

There was no time to grieve. I had school and papers and midterms and a book to publish, meetings with service providers and Queen Teen's teacher. By Friday I was still sad, but ready for class, and while I drove to San Francisco I thought about Queen Teen's need for alternative communication and probably a power chair. I needed to lift weights and learn ASL even faster than I'd anticipated. It would be okay. We'd get through it somehow, just the way we always do: with love, faith in each other, and a lot of gallows humor.

The weekend's classes were focused on working with people with multiple disabilities; people who use canes and walkers and wheelchairs. My teacher began discussing the process that families go through when a child's disability requires a power chair. It's hard to watch your child go from walking to needing a chair. Parents grieve, and children grieve for the freedom they lost. There's also a lot of anger...

Are you frickin kidding me? This week, of all weeks, is the week we discuss children with degenerative conditions and how they need to be able to use a chair? I wanted to spring up and run from the room, but I didn't want to create a spectacle. Instead I focused on breathing, trying not to cry, trying not to show how unbelievably impossible this situation was. Was this some kind of cosmic joke? Was the universe or God or whoever you want to believe in out to get me? The reason my whole world was unraveling was the class topic? Then I felt the edge of hysteria, like I would start laughing so loudly I would scare everyone, right before falling on the floor and disappearing. It was just too surreal and painfully ridiculous.

I didn't fall apart. I got through the rest of the day and made it back to the security of my home in one piece. But I'm dreading next week's class. Why? Because the topic is Deaf-Blindness.

Yeah, I kind of already know that one too.


Molly Burke, Queen of Confidence said...

Your dogged courage always moves me.

Molly Burke CPCC MSU
Queen of Confidence
"Even before I begin, I am made of win!"

Mommy, I'm Home said...

My heart breaks for you, but your family will get through this because of your courage. Hang in there.

sara said...

Terena, your perspective has a gentle way of shaking up the world. Your words and perceptions have the power to awaken us providers by allowing us to see and feel the human consequences of disability beyond our dry didactic clinical perspective. In short, your posts should be required reading for all providers who serve the disabled community. Thank you, Terena. Thank you.

TheRextras said...

You did good.

I'm not fond of all-or-nothing prognosis. Not second guessing your doc, but if her knees are bad, then preserve them (now) asap with a power chair (now) for continued walking in her home long term. My choice of priorities for someone I loved in this situation would be to preserve the ability to stand and bear weight for transfers and be pain free.

Sounds like he sent her out to walk on damaged joints until they disintegrate.

I am fond of the second opinion - if it is an option.

Browse my middle column (heh, like you have time) - perhaps over a break between semesters you can re-group around this walking part-time idea.

Also, I've done 2 other posts on the Charlie Rose series (parts 1&2). Part 2 was primarily on vision - scroll down it was recent.

Information is all I have to give - given in friendship and care, Barbara

The other Judy said...
This comment has been removed by the author.
Sarcastic Bastard said...

Sometimes you DO just have to get drunk. I am very sorry that you and your family are having to endure this.

I wish you peace.


leah said...

Terena, sometimes there are no words. Sending positive thoughts your way. You are going to be one heck of an educator because you have the empathy and courage it takes, and you know how hard things are because you've walked that road yourself.

Thinking of you guys.

K.L. said...

I'm so sorry for all the bad news being heaped on all at once. I wish I knew why life has to be so hard sometimes.

I'm not all that up on her situation, but would implants be an option for your daughter? If nothing else, she could see improvement in her hearing even if she has to lose vision and mobility.

Princess Abigail said...

Oh dear I am sorry.
I didn't realise this had happened.
Am sending you lots of warm positive vibes of friendship to help pull you through.
I am from a different disability universe, but I do so fully understand your anger, hysteria, panic and just plain sadness.
The vibes are dashing across the ocean as I type!